Coming to terms with Secondary Progressive MS

Life is a process of becoming, a combination of states we have to go through. Where people fail is that they wish to elect a state and remain in it. This is a kind of death.

Anais Nin

My garden in June 2010

One of my passions of recent years has been gardening. Planning, planting, transplanting, seeding, feeding, weeding, cutting back … the constant interaction between the plants, the bugs, the slugs, the worms and me. To garden is to create a cyclical story, a kind of soap opera – the plants grow, they flower and die back, often to return the following year. The whole pulsates with a rhythm of the seasons but each year’s garden is different to the previous year’s. Each plant is a process, emerging from its seed, growing and finally dying and being replaced. The garden is the sum of all these processes, always changing, always different.

Recently, it’s occurred to me how the understanding of the reality of processes can help me in dealing with multiple sclerosis. That sounds like an opaque maxim from a self-help book but, please, go with me on this one for a while.

When I was diagnosed with Relapsing/Remitting MS in 1999, it felt like a bit of a disaster. I was going through a divorce at the same time with all the associated events like losing my home and seeing much less of my children. Quite where each quantum of pain was coming from was sometimes difficult to discern. It felt like a torrent of broken dreams crashing over my head.

Gradually, I picked myself up and worked out a new direction for my life. As part of that, I learned how to live a normal happy life despite having multiple sclerosis. I think there are several ways of coming to terms with Relapsing/Remitting and the one I chose was acceptance. In essence, my thinking went something like:

I’ve got MS – So what? – Let’s get on with life.

This worked because my relapses were fairly infrequent, fairly mild and recovery was always fairly good. While I did suffer a few long-term disabilities, they were comparatively limited and didn’t much interfere with the things I wanted to do. I was able to ignore MS because it was pretty much ignoring me.

Then, at some point before 2007, and it’s very difficult to mark a precise date, I began to notice a very slow and gradual deterioration in my walking and my bladder, bowel and sexual functions. This was not related to any relapses because I didn’t have any.

And so in 2007, the neurologist diagnosed me with Secondary Progressive multiple sclerosis.

At the time it didn’t really bother me – inevitably I’d been following my own condition so I already knew I’d reached that stage. But by creeping up on me the way it did, I failed to take in what progressive MS meant personally. I’d been used to being able to walk fairly well and now my range was being restricted. I’d been having mild urinary and bowel symptoms but I was managing these as they developed. This was made easier by my reluctance to talk about them to anyone non-medical, which, to an extent, kept them out of my consciousness. In any case, the severity of both waxed and waned so I could always look forward to an improvement when they were at their worst. The sexual dysfunction was responding so well to medication that it had ceased to be a problem.

So, yet again, I was being lucky. I know that for some people, progressive MS races away and, within a few short years, they become profoundly disabled. And so it wasn’t really until this year that I realised that I’d reached a level of disability that was significantly impacting into my life. The problems thrown up were different enough to those of relapsing-remitting MS that it’s only recently become apparent that the coping strategy I had been using was no longer working.

Secondary Progressive is all about changes. Nothing stays the same. One by one physical functions start to deteriorate and then continue to worsen as time moves on. The disease had changed from a fact to a process. I can no longer just accept it and leave it at that because the state of disability I’m accepting won’t persist long into the future. What I’m faced with now is the problem of how to manage the change – how to live a fulfilled life while some of my abilities fade about me.

And this is where the garden analogy becomes pertinent. This disease and my life are processes – in many ways the same process – just as the garden is a process. Plants wither and die but I don’t stop gardening because of that. I manage the loss by planting new flowers. So it is with secondary progressive. As I lose the ability to do something, I must not only come to terms with that loss, but I must also replace it. I used to love long walks in the countryside but I can’t do that anymore. I accept that pleasure has all but gone. Of course, I can still use a scooter to continue to enjoy nature but the physical quality of the pastime is dead. I have accepted the loss of this activity and replaced it with Modern Jive dancing (see my last blog entry).

Now it feels that there are an almost limitless number of pursuits waiting to be promoted into my life – clay modelling, painting, studying, reading, finishing my novel, web site work, chess … and the list goes on and on.

But some things cannot be replaced – instead they must be made to work. They demand to be satisfied even if I lack the physical resources, for example bladder and bowel function. Thus far, I’ve been able to manage these types of loss with medical help and I’ve every reason to believe that I can go on doing this well into the future. Again it’s like the garden. I have outbreaks of powdery mildew on my geraniums and take steps to control it and rescue the plants. The change is managed.

I won’t pretend to have devised a flawless method of dealing with progressive MS. Each new level of disability is a blow and I’m still working on how to address the concomitant loss of status. But I’ve got a work in progress and, with the other things happening in my life, the future looks rosy.

The garden, on the other hand, has been rather neglected of late. I can’t blame my disability this time – there’s nothing there that I can’t manage or that my children won’t do for me. No, this is down to laziness.

8 comments on “Coming to terms with Secondary Progressive MS”

hi dear…
im a medical student,living in iran and a MS patient.
your seeing to life is very beautiful..i somtimes afraid from future and its not good.but you are excellent…i hope a beautiful life for you…
take care.

Thank you. My story follows follows yours, near prescisely, in terms of dates, interests and impact of MS, although I have only just begun to admit to myself that secondary progressive has begun. I’m scared, angry and confused tonight, and your blog post has been very comforting. Thank you for your positive perspective. May any further progression be manageable and may your garden continue to blossom!

You have an amazing attitude towards your MS. I admire you very much. It was heartbreaking to read your blog, but at the same time, very motivating. I too, have MS with an apparently bad prognosis by my Neurologist. I hope I have your attitude when (if) the time comes. I will remember to try and replace loss with something new.
I wish you all the best.

I also have secondary progressive.I appreciate the stuggle to stay positive when a good day is one that I managed to get to the bathroom on time. I have accepted the realities of this condition but what frustrates me to no end is the fact that my extended family does not understand that as my abilities dwindle my need for assistance increases.They are all prepared for that fall or injury needing “THE BANDAID”,but cannot make sure that the coffee tin is on a shelf that I can still reach.Once I mention it then the tin is down but the sugar that was beside it up there, is still up there. So ….. I mention that and ..so on. It’s the little things for me that pile up day after day. I wish there were some way to have them understand that my digression is ongoing; a process. The exact opposite to a young child that learns to stand , then walk ,then run.I do my best to be patient with them but it’s not easy. It’s taken away my privacy, independence,sexlife and my sense of humour. What will it take next? What can it not take? I would like it to take away my ability to hear that phrase “Are you alright?” Please.

I just found your website. THANK YOU! My MS history and dates parallel yours. First symptoms in 1980, diagnosis in 1983. Secondary Progressive sneaked up on me as well. I’ve opted out of all MS drug regimens because I have so many prescription allergies and sensitivities. The side effects of the MS meds scared me more than managing my symptoms.
Just this month I have begun telling my story on my new blog. Thought I’ve been very open about my MS, and my forearm crutch clearly signals mobility issues, I found it hard to begin telling my story – mainly because I didn’t know where to start.

You have created the website that I NEEDED in 1980! This will help thousands of people. I will include your link on my blog:
truevinegarden.org
“VINE ABIDING”